RESUMO
It is estimated that 4 million youth aged 15-24 years live with HIV globally, 85% of whom live in sub-Saharan Africa. For youth living with perinatally acquired HIV (YPHIV), stigma is frequently linked with negative health outcomes. YPHIV face distinct HIV stigma experiences across the lifespan, particularly because of the centrality of the family context in their HIV experience and the reality that they have lived with HIV since birth. Nevertheless, our understanding and measurement of stigma remains limited. One way to improve our understanding of HIV stigma for YPHIV is through in-depth exploration of embodied narratives of HIV experience. This paper is based on fieldwork that incorporated a collaborative arts-based approach with a group of six YPHIV in Tanzania. Using artwork and a theoretical framework of embodiment, this paper phenomenologically describes their narratives of HIV experience, perceptions of stigma over time and imaginations of the future. This paper highlights that collective solidarity, habitus and participants' desire to reframe others' perceptions about them and relieve the suffering of others shape the embodied experience with HIV. Moreover, this paper argues that stigma experiences for YPHIV are temporal and have changed over time with increased age, interventions and biomedical advances. Broadly, while HIV stigma continues to exist, participants report responding to stigma with agency by creating alternative solidarities and pushing boundaries of possibility, reframing others' perceptions of them and acting on dreams for better futures.
Assuntos
Infecções por HIV , Humanos , Adolescente , Tanzânia , Estigma SocialRESUMO
This article puts critical disability studies and global health into conversation around the phenomenon of scarf injury in Bangladesh. Scarf injury occurs when a woman wearing a long, traditional scarf called an orna rides in a recently introduced autorickshaw with a design flaw that allows the orna to become entangled in the vehicle's driveshaft. Caught in the engine, the orna pulls the woman's neck into hyperextension, causing a debilitating high cervical spinal cord injury and quadriplegia. The circumstances of the scarf injury reveal the need for more critical cultural analysis than the fields of global health and rehabilitation typically offer. First, the fatal design flaw of the vehicle reflects different norms of gender and dress in China, where the vehicle is manufactured, versus Bangladesh, where the vehicle is purchased at a low price and assembled on-site-a situation that calls transnational capitalist modes of production and exchange into question. Second, the experiences of women with scarf injuries entail many challenges beyond the injury itself: the transition to life with disability following the rehabilitation period is made more difficult by negative perceptions of disability, lack of resources and accessible infrastructure, and cultural norms of gender and class in Bangladesh. Our cross-disciplinary conversation about women with scarf injuries, involving critical disability studies, global health and rehabilitation experts, exposes the shortcomings of each of these fields but also illustrates the urgent need for deeper and more purposeful collaborations. We, therefore, argue that the developing subfield of global health humanities should include purposeful integration of a humanities-based critical disability studies methodology.